Thursday, October 04, 2007

The Center for the Medical Treatment of Stuttering (CMTS)

I am currently in Orange County / LA, and I will attend tonight's opening ceremony of The Center For The Medical Treatment of Stuttering at UCI Medical Center, which is headed by Gerald Maguire who is a psychiatrist and the world leading (and only) clinician/researcher on stuttering medication. The center was made possible by a 1 million dollar endowment from Granville Kirkup. The focus of the center is on treating people who stutter using medication, on the research into stuttering medication, and on teaching. They will put out a press release to which I will link.

The center is a really great initiative to explore new avenues in the treatment and understanding of stuttering. The area of stuttering medication is still in its infancy, but shows promises at least for some patients. It's still early days, and some, especially from the traditional stuttering community, are quite skeptical and critical. However, it is also fair to say that most critics do not really know much about neuropharmacology and act out of instinct, and most importantly do not offer effective long-term treatments themselves. I get tens of emails from people who are looking for new avenues as traditional approaches have not helped them a lot. I am not saying stuttering medication is the answer for everyone or a cure for some. But we must explore new approaches.

Jerry has invited me to the opening, and I have been offering him free advice when needed on various issues from statistics, scientific methodology, fundraising to website design. But I'll keep an open mind, and I am not endorsing stuttering medication. I just do not know enough about them, and lack first-person experience. However, I fully endorse the idea that we must spend much more efforts on exploring this new avenue. In the same way, as we should with genetics and brain research into stuttering.

It's interesting that you report that many people are skeptical and critical of medical interventions for stuttering. The fact that you're highlighting this attitude suggests that it is reasonably common, not a fringe reaction. I wonder why.

In your experience, what do you think accounts for this?

I can imagine some reasons:

- People have been trying medical (pharmaceutical) treatments for years with very limited success.

- Some people are negative toward any medications, preferring holistic/"natural"/homeopathic treatments.

- Some people may have a skepticism that medical treatments will be found. The nature and basis of this skepticism differs depending on their education and knowledge about the causes and mechanisms, or postulated causes and mechanism, underlying.

- Some patients may have invested a lot of time, money, and emotional energy in the speech therapy approach, and they may be reluctant to accept that a "magic pill" approach might have some benefits. People tend to respect the value of hard work; if it's not hard work, it's not effective. (I'd imagine people have a similar reaction to the idea of weight-loss pills: dieting and exercise are hard work, and (so they believe) people who think otherwise are deluding themselves.)

- Some people, such as speech therapists, may find their treatment model threatened, undermining their longstanding professional beliefs. They may consider other non-traditional practitioners (such as medical doctors) as arrivistes, newcomers who are encroaching on "their" territory.

- Existing practitioners may feel a financial threat, in that alternative treatments would be offered by other practitioners (doctors) who would in that sense be in competition for the same treatment dollars. (That effect is increased by the fact that pharmaceutical drugs are are typically covered by medical insurance, while speech therapy for stuttering is covered much less often and typically with reduced rates. By subsidizing drugs, insurance puts a finger on the scale of the financial competition, in favor of drugs, against speech therapy.) Even if a traditional speech therapist were to partner with a doctor in drug therapies as an additional component of treatment, the benefit contributed by the non-speech therapy portion would probably reduce the total dollars spent on speech therapy, for the same level of benefit.

(I hope no one is offended at the last two points. No one questions that speech therapists care deeply about their patients' welfare and I certainly don't mean to suggest otherwise. But therapists

- naturally also care about the standing of their own profession; like any "industry":

- they care about the size of the market for their services;

- and they care about their own personal financial welfare and are naturally alert to potential threats, particularly from competition which (speculatively) has the potential to be cheaper.

This is simple human nature, it's respectable and understandable, and it's no criticism in acknowledging these human issues.)

Tom - In your own experience, what have you seen as the reasons for the resistance to medical treatments or research?

I am an Occupational Therapist, not a speech therapist, so I can relate a bit to how a "therapist" might feel. I think the needs so far outweigh our ability to help that any successful intervention is worth trying. In OT and PT there is botox that can give such a big jump in success. I also think that many people give up on therapy if the results are not sustainable. That's the case with my son. Now that he is able to utilize the therapy without as much effort (medication / fluency master) he's able to make use of the therapy and is motivated to continue and it seems as if it will have and end date.Lynne